36: The Cardinal Rule

36: The Cardinal Rule

From Chicken Soup for the Soul: Raising Kids on the Spectrum

The Cardinal Rule

The path I travel is lit by those who came before me, and it will shine brighter for those who follow me.

~Author Unknown

My son Ryan’s diagnosis of autism spectrum disorder at eighteen months brought about a dramatic paradigm shift. Without hesitation, I accepted the diagnosis and moved forward with intensive early intervention. Time previously spent on my marriage, friendships, and career was reallocated to attending appointments, completing paperwork, researching, and acquiring funding for services. Any remaining energy was devoted to directly teaching Ryan new skills. The depth of unconditional motherly love I devoted to him was awe-inspiring, even to myself.

Three years into our early intervention journey with Ryan, my younger son William, at nineteen months, was also diagnosed with autism. The persistent demands on my time, finances, social life, self-care, and the amount of energy required to implement evidence-based behavioral strategies in our daily lives were beginning to take their toll. By the time William was diagnosed I was growing weary and hadn’t quite learned how to respond to the judgment of others.

Not long after his diagnosis, I stopped by a mini-mall with William in tow. Until this day he had no history of escape attempts. I believed I could complete the errand while keeping him safe. I was wrong.

When we entered the store, I buckled William into a shopping cart and provided him a lollipop to keep him busy while I shopped. When the sucker was gone he began thrashing violently in the cart. This is where I made my first mistake. I did not yet understand that bringing my son shopping comes with the risk that I may not finish before we need to leave. I was stubbornly determined to finish my shopping despite William’s growing discontentment.

As my son’s tantrum became louder, a nearby shopper lowered her chin and looked at us with disapproval. I felt pressured to quiet him. This led to my second mistake. Instead of using my behavioral training, I was more concerned about the impression of the other customers. So, I unbuckled William and set him down in an aisle between two rows of clothing. I reached back into the shopping cart to retrieve my purse and when I looked down, he was gone.

I peeked under the rack of clothes directly in front of me. No William.

I turned around to check under the rack behind me. No William.

I called his name. Silence.

I rushed out from the clothing racks to the main aisle but he was nowhere in sight. My son had disappeared.

I scurried toward the back of the store, shouting, “William? William! Where are you?” All of my shouting was to no avail; he did not answer me.

Then it hit me.

My child could not speak. William was not going to respond. As I surveyed the scene I continued calling his name, each attempt more desperate than the last. There was no time to stop for help but maybe if someone heard me they would join my search.

After systematically combing through the store I headed back toward the front door. I looked up and standing before me was a woman with beautifully styled hair, carefully applied make-up, and neatly pressed clothing. She was practically perfect. On her hip sat William. What a relief.

William’s face was calm but hers was bright red, with narrowed eyebrows, a lowered chin and a stern glare. She was fuming. I ran to her and took him tightly into my arms. The woman said, “Do you know where I found your child? He was wandering around outside in the parking lot.”

I peered over her shoulder at the front door. It was the kind that opens automatically. William must have run straight to that door and the door opened up for him to run outside.

I looked at the Good Samaritan who rescued William, my eyes pleading for understanding, and managed to eek out, “Thank you.” By now I noticed a group of onlookers glaring and seemingly sharing in her disgust. The woman held her glare steady, then sucker-punched me with: “Some people were just not meant to be mothers.”

Not meant to be a mother? Are you kidding me? Did she have any idea what I had been through in the last three years with Ryan? Thousands of hours dedicated to paperwork, appointments, therapy, school district, parent training, medical bills, marital strain, and now I was doing it all over again with William.

Despite everything I had endured in the name of motherly love, there I stood, the center of attention of a disapproving crowd questioning whether I was qualified to be a mother. Should I have told them he had autism? Would they have even understood how that related to what just happened?

At that moment I remembered that an experienced mother of a child with autism had given me information cards about autism. I retrieved the cards from my purse and handed one to each of the onlookers, including the Good Samaritan. It was empowering to educate the public who judged me so harshly. I smiled graciously and said, “Thank you for all of your help.” I held my head high as I carried William to my car. We never did buy the items we needed that day, but my son was alive and safe.

Later that evening, I thought of the experienced mother who armed me with autism information cards. I wondered how she knew that I might one day need those cards.

Today, six years into our journey, there is more clarity about what is involved with raising children with autism. Our family has created a new dream. My husband and I have reclaimed our marriage. My sons have benefitted from an early diagnosis, educational services, funding for therapy, intensive early intervention, rehabilitative and alternative therapy. I am proud to say our family is strong and thriving.

Meanwhile, my perspective on raising children with autism has expanded from family-focused to community-focused. I appreciate the value of forming connections with other families so that we can encourage each other and build each other up. Thanks to the tenacity of experienced parents who are continually clearing pathways on behalf of all of us, my sons’ futures are bright. These mentors, who have walked this path before us, lead by example in passing down the cardinal rule for parents of children with autism: We pay each other back by paying it forward.

~Hope Maven

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